I’m doing GREAT! The burning in my lungs has gone and I am now down to 2 mgs of Prednisone every other day. I have some sore pain in my knee and in some other joints but it really comes and goes. I think it is typical for what I have seen in the past while stepping down on the medications. My kidneys still hurt on and off, but I think that they are getting better too. I have to go to the doctor for a quick blood test to make sure the potassium tablets are working right, but I expect they are based on the relief I have had from the digestive “issues”.
All in all, I’m still optimistic.
Michael
3 comments:
Hi -- I'm so glad to have found your blog. I had sarcoidosis in 1995 that presented with erothyma nordosum on my lower legs, arthritis, and a nodule on my lungs. My doctor dismissed me two years later and told me that I should never have to deal with this again. My legs have never returned to normal. I still have the scar tissue and red/brown spots. Arthritis and inflammation come and go. Plus, I'm beginning to feel out of breath. Have you ever heard of this going away forever? You can respond to me via email: d.shumaker4@verizon.net. Thank you and God bless!
Wow! I’m sorry to hear that you have had such a hard time with this. From what you are saying it sounds like you haven’t gotten the competent help that you need.
To answer your question…
“Have you ever heard of this going away forever?”
Yes, my doctor treats about 10 people at a time with sarcoidosis and he says that most of them remit. My dad had sarcoid for 10 years before it remitted, but it did remit. (They know a lot more about treating sarcoid now than they did back then.) I can’t say that everyone one has the same experience, and for some it is harder than others, but there is clearly hope!
Never give up hope, never stop looking and never stop fighting... Oh and finding a better doctor helps too. =)
Michael
Wow, that really sucks that you're having such a hard time with it.
I suffered from this a few years ago and I want to tell you that it does get better. Give it time and the pain will go away and things will get back to normal.
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